Some Thoughts On Treating Microscopic Colitis
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Deb,
I have already been doing this for a few months, but feel as if I am no closer to remission than I was at the start. I am less scared and lost thanks to the great people here, but still battling.
I wish the GERD would go away, so I could quit sucking rock candy to keep my salivary glands working. Without it the heartburn gets really bad. I am imbibing WAY too much sugar.
Z - I LOVE the pink toaster. I wish Hello Kitty made a banner on which you could write "Gluten not welcome in me!"
I have already been doing this for a few months, but feel as if I am no closer to remission than I was at the start. I am less scared and lost thanks to the great people here, but still battling.
I wish the GERD would go away, so I could quit sucking rock candy to keep my salivary glands working. Without it the heartburn gets really bad. I am imbibing WAY too much sugar.
Z - I LOVE the pink toaster. I wish Hello Kitty made a banner on which you could write "Gluten not welcome in me!"
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I am loving this - hot pink toasters! and husbands who are hello kitty fans
this re-affirms my belief that before MC, I felt disconnected from the world, here in PP world, i feel at home and akin with so many!
Zizzle, when i make cakes for work morning teas, I dont tell anyone that it is 'gabe safe' food, i just put it in the middle of the table (hide the fact that i bought my own knife to cut it etc), and then busy myself making a coffee and see what happens, a couple of times i have had to race back to the table to get a slice for me before it is all gone!
i think part of the novelty is that it is 'home made from scratch' it didnt come from a mass production bakery or a packet (well it kinda started as a packet with gabe enhancements)
lately i have starting adapting my receipes to be gabe safe so each time i am sharing something slightly different, and people are keen to try my new experiement.
this re-affirms my belief that before MC, I felt disconnected from the world, here in PP world, i feel at home and akin with so many!
Zizzle, when i make cakes for work morning teas, I dont tell anyone that it is 'gabe safe' food, i just put it in the middle of the table (hide the fact that i bought my own knife to cut it etc), and then busy myself making a coffee and see what happens, a couple of times i have had to race back to the table to get a slice for me before it is all gone!
i think part of the novelty is that it is 'home made from scratch' it didnt come from a mass production bakery or a packet (well it kinda started as a packet with gabe enhancements)
lately i have starting adapting my receipes to be gabe safe so each time i am sharing something slightly different, and people are keen to try my new experiement.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
This is such a great thread, Tex. Please do make it a "sticky". I just love all the well thought out comments here.
As you may have noticed on a note I posted yesterday, my insurance isn't going to cover Entocort until I've met my $4,000 deductible. In a way, this is good. My husband and I have decided to bite the bullet and get me the Enterolab testing soon. I've benefited greatly from GF/DF/mostly SF diet in conjunction with Entocort, but have almost no Normans and know that when Entocort goes away, full diarrhea is likely to return.
I believe that what Sara and Polly, among others, have done with food is exactly what I need to do. I just need more assistance in knowing what other foods I have to avoid.
BTW, I feel so much better now, perhaps better than I have in 30 years. It's amazing how bad off I was and didn't know it. I'm almost off the anti-depressants I've been on for 17 years, my joints are feeling lots better, I sleep better most of the time, my joy de vivre has returned, and I actually laugh more.
I'm trying to convince my husband to go GF, but because money is so tight right now, he's reluctant. He really likes his sandwiches at lunchtime and cannot fathom eating a GF sandwich because of the size of the bread and the texture, not to mention the cost. I'm going to keep after him. Whether he likes it or not, he's already gone partially GF because I'm the one who cooks in the house.
I hope the hot pink toaster and Hello Kitty stickers are all doing well. Thank you all for being an important part of my life!
Sharaine
As you may have noticed on a note I posted yesterday, my insurance isn't going to cover Entocort until I've met my $4,000 deductible. In a way, this is good. My husband and I have decided to bite the bullet and get me the Enterolab testing soon. I've benefited greatly from GF/DF/mostly SF diet in conjunction with Entocort, but have almost no Normans and know that when Entocort goes away, full diarrhea is likely to return.
I believe that what Sara and Polly, among others, have done with food is exactly what I need to do. I just need more assistance in knowing what other foods I have to avoid.
BTW, I feel so much better now, perhaps better than I have in 30 years. It's amazing how bad off I was and didn't know it. I'm almost off the anti-depressants I've been on for 17 years, my joints are feeling lots better, I sleep better most of the time, my joy de vivre has returned, and I actually laugh more.
I'm trying to convince my husband to go GF, but because money is so tight right now, he's reluctant. He really likes his sandwiches at lunchtime and cannot fathom eating a GF sandwich because of the size of the bread and the texture, not to mention the cost. I'm going to keep after him. Whether he likes it or not, he's already gone partially GF because I'm the one who cooks in the house.
I hope the hot pink toaster and Hello Kitty stickers are all doing well. Thank you all for being an important part of my life!
Sharaine
This is a great thread and the information, as well as the humor, is so valuable. Like all of you I am GF and frankly if I could eat fiber, like a salad, this would not be difficult at all. Maybe someday but not yet. The last time I ate some fiber, thinking I would introduce it in very small amounts and that I was probably ready, I had D for 6 days straight after the first day. Now at least I know what to do before the next colonoscopy, right?
Sharaine, today I made GF bread from a mix from the Gluten Free Pantry. It will make a 2 pound loaf. Since my bread machine is a 1 lb loaf I can get 2 loafs of bread for the $4.99 price. I'm good with that. And as far as taste and texture-- it was as good as the Egg Bread I used to make from scratch. In fact my husband thought it was very good.
My latest issue is that, even though I'm doing relatively well, I often have a persistent discomfort in my abdomen. That makes me think I am having a mild reaction to something. I'm already GF and still avoiding dairy, so now I'm looking at soy and as of yesterday I've started restricting soy. Since I'm getting off the Entocort, I feel it is truly up to me now.
Thanks again for such an engaging post.
Carol
Sharaine, today I made GF bread from a mix from the Gluten Free Pantry. It will make a 2 pound loaf. Since my bread machine is a 1 lb loaf I can get 2 loafs of bread for the $4.99 price. I'm good with that. And as far as taste and texture-- it was as good as the Egg Bread I used to make from scratch. In fact my husband thought it was very good.
My latest issue is that, even though I'm doing relatively well, I often have a persistent discomfort in my abdomen. That makes me think I am having a mild reaction to something. I'm already GF and still avoiding dairy, so now I'm looking at soy and as of yesterday I've started restricting soy. Since I'm getting off the Entocort, I feel it is truly up to me now.
Thanks again for such an engaging post.
Carol
Lol. I just had the share this article about pink toasters. My cheap Sunbeam is mentioned at the end. Notice the Hello Kitty toaster makes Hello Kitty designs on the toast! Love it!!
http://pinkkitchengadgets.com/pink-toaster/
http://pinkkitchengadgets.com/pink-toaster/
I wanted to share my story as i found this site useful when I was diagnosed with microscopic colitis two years ago. I am tall and already skinny, started losing weight and having frequent washroom visits after I had my first child. I was scared because I hadno weight to lose, steroids round did nothing for me. I met with a naturopath who essentially eliminated everything from diet down to meatsnd cooked veggies. This reduced my bathroom visits from 10 to 4 a day. I was still losing weight though because so much had been removed from my diet. I was 5'10 and down to 109 lbs, scared and depressed. I slowly started adding things back to my diet and got up to 115 lbs a month or so later. Main things I eliminated were nuts, gluten, caffeine l, any sugar and dairy. I tried the drug asacol and this combined with a new diet and eating as many calories as I could, 3k a day for a month, I got back up to 121. I was 123 before all this. I no longer have dhiarhhea, have added a lot back to my diet, sugar still the worst culprit for me but I can eat bread now and then. When trying to gain weight I suggest adding coconut oil to smoothies and brown rice protein. Also try goat cheese as there is no lactose in it, brown rice pasta and gluten free baking to get the carbs and fat. Some juice is ok, recommend POM to start. I know looking back at the amount of processed food, coke, ice tea etc I was eating that this probably led to it. Also when i was oregnant I drank a lot of milk and kept that up afterwards, not good for my body. The whole process took about6 months to resolve. You have to ask your soecialist to try asacol, he was not forthcoming but it wasrecommendedto me. Hang in there
Part of the issue, at least for me, is that diet and healing seem so complex and can be a very frustrating and lengthy process. For instance, I am staying strictly gluten and dairy free. I'm avoiding all grains except for rice. I'm sticking to turkey, salmon and lamb and well cooked vegetables, banana, and nuts. My symptoms seem worse than ever. I have the results from EnteroLab, which really were good because it shows only gluten and dairy that are big issues with Oats being a slight issue. In a way that's frustrating because, obviously, in order to heal I need a more extensive elimination diet. I'm awaiting the results from the Genova testing so perhaps I will learn more about what to do to precipitate healing. I am trying to avoid going back down the medication path. Any advice on how long it takes to see improvement from diet changes?
The inflammation that drives classic MC is caused by T cells. But it's also possible for MC to be perpetuated because of mast cell activation disorder (MCAD) which causes inflammation due to the release of excessive amounts of histamine. For many of us who are unable to reach remission by the usual diet changes, mast cells seem to be the problem. If this applies to you, you might be able to control your symptoms by taking 1 or more ordinary antihistamines each day for a while. Here are links to some short articles that describe how mast cells are associated with MC:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Tex
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
The answer to this is 'it depends'Any advice on how long it takes to see improvement from diet changes?
depends on
how long you have been gluten and dairy free? (it can take 6 months for all the gluten anitbodies to leave your body)
how long you had chronic inflammation going on and how much damage there is to the gut?
are you taking any other medications that could be triggering MC issues? Nsaids, Asprin, SSRI's, hormones, etc
are you taking any Vit D3?
the nuts maybe a bit too high in fibre and causing irritation....
triggers can also be non food related, Stress is a big trigger for me (emotional, mental and/or physical), for others it can environmental things like mould, chemicals, pollution etc.
And as tex has mentioned if you are having mast cell issues, some of your vegetables and the banana's with environmental triggers could be causing histamine/mast cell inflammation.
sorry there is no black and white answer... sadly in MC world nothing seems to be simple or black and white - there are so many variables
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks Tex I agree my Specialist just wants to put me on steroids I refuse so diet and acupuncture (thanks to gabe for the referral) is what I am doing each person is different in theio recovery and different foods trigger differnent people. I bought a thermomix last week so hoping to make my own stock sauces etc no more foods with all these preservatives in them
Karen Moran
Karen,
Most of us thought that we were eating a healthy diet before MC came along. But one of the things that I find to be fascinating about treating the disease by diet changes is the eventual realization that after we recover, and we continue to maintain our remission by diet alone, virtually all of us end up with a much healthier diet than we had previously. That has to be good for our health, in the long run.
You're off to a great start.
Tex
Most of us thought that we were eating a healthy diet before MC came along. But one of the things that I find to be fascinating about treating the disease by diet changes is the eventual realization that after we recover, and we continue to maintain our remission by diet alone, virtually all of us end up with a much healthier diet than we had previously. That has to be good for our health, in the long run.
You're off to a great start.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex
I truly believe what I put in mouth mouth makes a huge difference. I have been feeling great then Sat night I made a green smoothie with pineapple,mango,grapes and kale in it and within 20 minutes gut ache terrible wind and then the D started all day Sunday on the loo. So want be having them again in a hurry. Feeling great today and off for another acupuncture wed night. I have just bought a Thermomix so will be making a lot of my own bread, butter, cheeses etc.
Kaz
I truly believe what I put in mouth mouth makes a huge difference. I have been feeling great then Sat night I made a green smoothie with pineapple,mango,grapes and kale in it and within 20 minutes gut ache terrible wind and then the D started all day Sunday on the loo. So want be having them again in a hurry. Feeling great today and off for another acupuncture wed night. I have just bought a Thermomix so will be making a lot of my own bread, butter, cheeses etc.
Kaz
Karen Moran
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kaz
early days I would avoid fruit based smoothies (really hard during the aussie summer I know)
a combo of the fruit sugars and fibre (even though it is blended) is a trigger for a MC gut.
Soups and stews are the best thing first up....
Hope Shauno is waving his healing magic over you!!
early days I would avoid fruit based smoothies (really hard during the aussie summer I know)
a combo of the fruit sugars and fibre (even though it is blended) is a trigger for a MC gut.
Soups and stews are the best thing first up....
Hope Shauno is waving his healing magic over you!!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I have found this topic to be one of the best on this site. Thanks Tex (I know it originated in 2011, but it still rings true - so glad it is easy to find and read)
I have found everything people are saying to be inspiring - so thank you to you All!
Being fairly new to the repetitive 6-7 foods for the last month what is the marker to add something in and wait three days? In the Bristol way of looking at things I used to be at a 7 - not a good place, but after making the huge diet elimination change I am noticing 5 and 6's now. Is that the marker or am I waiting for a 4 before making the next move?
Thanks
Erica
I have found everything people are saying to be inspiring - so thank you to you All!
Being fairly new to the repetitive 6-7 foods for the last month what is the marker to add something in and wait three days? In the Bristol way of looking at things I used to be at a 7 - not a good place, but after making the huge diet elimination change I am noticing 5 and 6's now. Is that the marker or am I waiting for a 4 before making the next move?
Thanks
Erica